Wednesday, May 30, 2012

People with Narcolepsy Fall Asleep in Fun Places

Here are a few of mine:


Runners up:
-In a busy airport under some chairs
-While standing at a youth rally (and I don't have cataplexy!)
-During the Lord of the Rings movie in the theater
-On the train every day going all through Philly in rush hour
-On every one of my textbooks
-In a hammock on a crowded beach
-In my car in a parking lot
-During every Rosary I've ever prayed (only a slight exaggeration)
-On a sidewalk in freezing temps while waiting in line for concert tickets

The best one, I think:

I once fell asleep while kneeling at Mass.  For those of you who may not be Catholic, during our church service, there is sometimes a period of light music after we receive Communion.  In that brief moment I fell asleep, and woke up because one of the priests dropped a metal lid.  It was one of those 'look around to see who saw you awaken with a start' moments.

Sunday, May 27, 2012

Nuvigil plus Claritin D 24hr

It's midnight...  No sign of sleep...

Narcolepsy Humor

I found a website with a list of "You might be narcoleptic if..." jokes.  I don't get some of them because I don't have extreme symptoms or cataplexy, but here's a sample and the link:

If you have memorized or carry in your wallet a list of "Why I'm Late for Work" excuses for 250 days of the year plus one for leap year.

If "NIGHT is to DAY as SLEEP is to ____" sounds like an unsolvable riddle.

If you have a clause in your will to hold your body for three days just to be sure.

If your Brita pitcher has only had a half an inch of water in it for three days because you just don't have the energy to "make" water.

If you're driving to work one day and realize that you're half way to the job you had 10 years ago, not your current job.

If your man left you for someone with a cleaner house.

If you know all the Serta Mattress sheep by first name.

If the statement "I have so much to do right now I'd better go to sleep." makes perfect sense.

If you keep a sleeping bag hidden under your desk. (or car!)

If you take a drug and experience being awake for the first time in a long time (if ever) and think that being awake is the most novel thing on this earth.

http://www.sleepwaketoronto.org/YouMightBeNarcolepticIf.txt

I wrote this one:

If your entire Pinterest board is a collection of pictures of really cool beds.

Sleepy Sunday

On Friday night I got a sore throat.  Usually that means a nasty, unbearable stuffy nose will shortly follow.  In order to bear this, I usually take a 24 hour decongestant (like Sudafed).  So, Saturday morning, that's exactly what I did.  But I decided not to take Nuvigil because I was unsure whether there would be an interaction.

Yesterday was my first day off Nuvigil since I started 2 weeks ago.  Needless to say I was very tired.  I took a 4 hour nap.  But was I tired because I skipped Nuvigil, or because I was sick?  Who knows!  All I know is that today I walked a few blocks to go to church, and I had a hard time walking back because I was absolutely exhausted (this was after 9 hours of very good sleep - an hour after waking up).

I decided to call the pharmacist and ask if there were any interactions.  He told me that a decongestant like Sudafed will intensify the effect of Nuvigil.  But I am still able to take both.  I just may be more "edgy," to use his word.  I just took the Nuvigil.  We'll see how it works!

Thursday, May 24, 2012

Tired Thursday

I've had a slightly busy week. I feel like I'm tired because I haven't had enough down time. So, I planned nap time for today when I get home from work.

What I really need to do is get this grading all finished. But that can't happen if I'm tired. I wonder what would be a good job for someone with narcolepsy...

Tuesday, May 22, 2012

Today

I'm too tired to blog.  I spent the day working, then met up with a friend to catch up.  Now I'm exhausted.  This is the point at which - in any endeavor - I give up because I am just too tired.

Trying to push through.  Not convinced Nuvigil is doing anything at all.

Saturday, May 19, 2012

First Nap on Nuvigil

I'm a little disappointed.  Today after work, I fell asleep.  I slept from 3pm to midnight.  How many hours is that?  Nine.  Saturday is gone.  More than most people's full night's sleep as a nap.  Alright, so I'm a lot disappointed.

Maybe Nuvigil isn't working.  I think I'll give it another (less chaotic) week.

Wednesday, May 16, 2012

Well, that was a weird night!

One of those issues you don't expect to come up...

Last night I was driving my sister home (she lives about 45 minutes away from me).  Suddenly a nasty thunderstorm broke out - so bad we could not make it all the way to her apartment.  Because of severe flash flooding, I had to find higher ground and stop.  It was a little frightening!

After about an hour, the rain subsided, and we were uncertain whether we could reach her apartment yet, so we proceeded with caution.  Around 1:30am, we finally made it.  Well, then I had a choice - do I try to drive home so late at night and with potential flooding in my way, or do I spend the night at my sister's on her leaky inflatable bed?

I decided that because of the narcolepsy I would stay put.  It is always a little more dangerous to drive when you have narcolepsy, but most especially when you are tired.  Better not to risk it.

But here was the next problem - I had to be at work (an hour away from either my sister's or my place) at 7:30am.  Given that it was 2am by the time we settled in, and I would have to get up by 5:30am, that would only leave me with 3.5 hours of sleep (I'm sure sleep time math is something people with narcolepsy do frequently) on a bed that couldn't support me.  Well, 3.5 hours is not enough to functionally teach on, and not enough that I really ought to be driving.

So, now I have to call out of work because I got to bed late.  That sounds like such a poor excuse!  I never miss work unless I have no other choice.  I have worked through some pretty powerful upper respiratory infections.  I wonder how my boss will react when she finds out...  I wonder if I should tell the truth...  I wonder if I should say anything at all...

Maybe I should put a sleep emergency kit in my car - camping mat or inflatable bed, pillow, sleeping bag,  toothbrush, toothpaste, granola bar, one of each medication I need, a change of clothes - work and play, shampoo, soap, and a sponge/puff/rag.

I took the meds, but I'm certainly tired.  Tried to nap, but couldn't.  Bed time will be reasonable tonight, God willing.

Monday, May 14, 2012

First Day at Work on Nuvigil

Well, I'm tired now, but I did well during the day.  Nuvigil is only supposed to last about 8 hours, and it was around hour 7 that I felt like falling asleep.

I'm a little more wound up than usual, but that could just be my hyper-vigilance from starting a new drug.

Sunday, May 13, 2012

First Awake Weekend

Well, I think it's safe to say that this was the first weekend in years that I stayed awake all day both Saturday and Sunday (unless I was working or otherwise absolutely obligated).  It actually feels like this has been a vacation - so much longer than normal weekends!

So, I certainly didn't freak out.  This is not like a concentrated shot of caffeine.  Today I was even tired.  As a matter of fact, I was a little disappointed by that.  It's like when I started on anti-depressants and was upset when I wasn't emotionally numb.  I was up until 2am yesterday spending time with friends.  I felt like a kid again!  It makes sense to be a little tired today, I guess.

But I am always leery at the beginning of a prescribed a medication.  I easily succumb to the placebo effect.  The mere hope that things will get better makes me feel better.  We'll see, I guess.

Answers to the previously posted questions...

-Is sleepwalking related to narcolepsy?  Sleepwalking is one of many conditions that involve being partially awake and partially asleep.  It is not simply related to narcolepsy.

-Can I develop cataplexy?  Sleep paralysis?  I am 32 now.  At this age, my doctor does not expect me to develop new symptoms or experience worsening of my current symptoms.  If I was younger, that would be more of a possibility.


-Is my bad memory related?  Not directly.  When testing people with narcolepsy (often referred to as PWN) test about the same as those without.  However, since it causes drowsiness, it can cause a lack of focus and attention.


-Everyone on the internet says the 15 minute naps help with narcolepsy.  Why do I need 3-4 hour naps?  This is one indication that it may be Idiopathic Hypersomnia and not Narcolepsy.  However, every one is different.


-Are there any good resources on narcolepsy without cataplexy?  Any awareness groups?  Not specifically for N w/o C, or Idiopathic Hypersomnia, but Narcolepsy Network is a great support for people with sleep disorders, especially related to these.


-How does my sleep cycle compare to normal?  Mine is normal.


-Will my driver's license be affected?  No, not in PA.


-When I laugh really hard, my knees do get weak.  Is that cataplexy?  Everyone I asked says they have the same thing.  It could be either normal or minor cataplexy.  Since the two overlap, there is no real way to tell.


-Are you sure I don't have MS? (I have a history of that in my family.)  Upon performing standard neurological tests during my first visit, my doctor saw no indications of MS.  :)

Saturday, May 12, 2012

This is very cool!

http://www.nytimes.com/interactive/2009/08/26/health/TE_NARCOLEPSY.html

It explains a whole lot!  Listen to them all, if you can.

And this article is great too!

http://www.nytimes.com/ref/health/healthguide/esn-narcolepsy-ess.html

Apparently they only just discovered the cause of Narcolepsy in 2000.  Wow!

Today I Start Nuvigil

(If you generally fall asleep while reading, I've highlighted the most important parts so you may skip the details.  I do this with my longer posts.)

I took my first Nuvigil pill about 45 minutes ago.  It's supposed to take an hour to kick in.

I wonder what it will be like.  My doctor said amphetamines get your heart racing, and make you sweat.  Nuvigil is not an amphetamine, but apparently is somehow similar.  I have a tendency to be anxious.  I wonder if I will freak out.  Apparently every person has a different experience.

I am also the type of person to avoid looking at the side effect information, because I always think I have the side effects.  There is a great website (http://www.narcolepsynetwork.org/) with a forum.  I am a fan of forums, but it seems like they are going out of style.  The people who participate in the forum are others suffering from sleep disorders and we all help each other out.  Anyway, they talk a lot about how Nuvigil affects them, but I refuse to read those threads.  I want to find out how it truly affects me before I read how it affects everyone else.  That way I don't get any ideas in my head.

Other things I know about Nuvigil:


-It is a controlled substance, so be careful!  Only take it as prescribed, and never let it get into the hands of another person for any reason.

-Insurance companies give you a hard time with it.  When my doctor gave me the prescription, he said, "Go and fill this.  They will refuse to fill it, then they'll call me.  This is how it works.  Here are some samples until you are able to get it filled."  Sure enough, I went to the pharmacy and they didn't fill it.  It's Saturday, so they will call him on Monday.

-It is related to Provigil.  It's one of those deals where Provigil was approaching the time when generics could be made, so the company developed Nuvigil, which will not have a generic for a while.  They just changed it slightly, and called it a new name.  The tricky thing is that Nuvigil is cheaper than the generic form of Provigil because the other companies are pricing it less than Provigil, but haven't caught on to Nuvigil yet. My doctor says they'll catch on some day.

Friday, May 11, 2012

Nuvigil Start Day

I couldn't start Nuvigil today.  According to the paperwork that came with the medicine, it may make people even more sleepy, so you need to test it on a day when you are not going to drive.  Since I had work today (an hour commute in each direction), I couldn't try it.  Maybe tomorrow after working my part-time job.  Maybe Sunday.  For now, I nap!

Thursday, May 10, 2012

Diagnosis


Officially, I have something called idiopathic hypersomnia (a.k.a. IH).  That means narcolepsy without REM during the sleep study.  It's also called Non-REM narcolepsy.  I fell asleep 3 times during my sleep study (normal people would fall asleep maybe once).  So, something is causing me to be more tired than normal, but "Idiopathic" means that the cause can't be determined.

There are 3 possible reasons I did not have REM during my sleep study: 1. I have IH, but not narcolepsy, 2. I have narcolepsy and the SSRI that I take hides the REM symptom, or 3. I am too old for REM naps (REM naps go away with age even in people with full Narcolepsy).  I have other symptoms of both IH and Narcolepsy.  The thing that makes diagnosis difficult is that IH and narcolepsy overlap with normal sleepiness - even when cataplexy (muscle weakness) is involved.  We may never know if I have or ever had narcolepsy, because even if I come off the Lexapro, I might be just too old to get REM during naps.  But it doesn't really matter because the treatment is the same.

I will be starting Nuvigil tomorrow morning.  It is not an amphetamine, but it is a "wakefulness promoting agent."  I'm pretty sure that means it is not a stimulant, but it should keep me awake.

I do not have apnea or restless leg syndrome.  In other words, nothing is stopping me from sleeping well during the night.

So, there you have it.  Ok, I'm tired.  Time for a nap.

Tuesday, May 8, 2012

Appointment

The sleep center wants me to come in to discuss the results.  No answers over the phone.  I was given two choices: two days from now or June 22nd!  I re-arranged my schedule to accommodate the sooner one.

Here are a few questions I want to ask him when I have my appointment (I wonder if he'll give me enough time to ask them all):

-Is sleepwalking related to narcolepsy?
-Can I develop cataplexy?  Sleep paralysis?
-Is my bad memory related?
-Everyone on the internet says the 15 minute naps help with narcolepsy.  Why do I need 3-4 hour naps?
-Are there any good resources on narcolepsy without cataplexy?  Any awareness groups?
-How does my sleep cycle compare to normal?
-Will my driver's license be affected?
-When I laugh really hard, my knees do get weak.  Is that cataplexy?  Everyone I asked says they have the same thing.
-Are you sure I don't have MS? (I have a history of that in my family.)


If this is not narcolepsy, I'll either have to re-name my blog or quit altogether.  We'll see on Thursday, I guess.

Sunday, May 6, 2012

Calling my Neurologist Tomorrow...

When I went for my sleep study, the tech told me to call the doctor if I hadn't heard the results by Monday - that's tomorrow.

I'm nervous.  I honestly don't know what I want to hear.

I wonder if I'll be able to sleep.  Is that irony?  I've always had trouble figuring out irony.

I wonder if they'll tell me the results tomorrow, or if they'll make me come in for an appointment.  When my little sister was researching Narcolepsy (after she heard I could have it), she realized her husband shows signs of apnea.  She's having him get a sleep study.  They told her that each study generates 1,000 pages of data.  That sounds like a lot, so I guess that's why it takes a while.

Waiting is hard.  Especially the closer the phone call gets.  It would have been better to get surprised early.

Tuesday, May 1, 2012

Done my Sleep Study

I was too groggy to write after my fourth nap to write about it.  But I'm done and home now, with paste all in my hair.  Surprisingly, I'm tired, and feel like I need a nap.

That was a difficult study but the hardest part will be waiting for a diagnosis...

Hopefully you're reading this after I post the answer.  Then it won't be as suspenseful.

Third Nap

Third nap of my sleep study went smoothly.  I am feeling better about the process now.

I could be in the dreaded 6th period lunch right now.  (Did I mention I'm a teacher?)  This is actually better than that.  :)

Feeling groggy, though.

Second Nap

I think I might have slept that time!  Yes!  Thank you Breathe Right Nose Strips!  (I'm a little stuffy today.)

Bring on Nap #3!

First Nap

Couldn't sleep.  :(

My First Sleep Study

I'm sitting here in a chair looking at the hospital bed that I spent the night in - which I am not allowed to get back into until my first scheduled nap.  It's taunting me.

Last night, I had a sleep study to rule out apnea (I think I passed), today I have to take five naps to determine if I have narcolepsy.

Last night was rough for me.  The combination of the stress plus a couple of other factors (most are unrelated to the sleep study) gave me a really bad headache in the middle of the night.  And I could only take acetaminophen (I would normally take ibuprofen, but I have erosion in my stomach - also unrelated to the sleep study).  If it wasn't for the headache, I would have been okay.

More later, I guess.